Molly’s Battle: Crohn’s, The Silent Disease

PITTSBURGH, Pa. (Ivanhoe Newswire) While a patient with Crohn’s disease looks healthy on the outside, chronic inflammation in the intestines can be waging war on his or her insides and many patients are too embarrassed to talk openly about it.

Watching 22-year old Molly Shannon race uphill, it’s hard to imagine there are times when she can’t get out of bed.

Shannon said, “When I am able to work out it makes me feel like I’m beating it because I’m overcoming the pain or fatigue I might have another day.”

Shannon had a bout of intense stomach pain when she was seven; ulcers that were visible in the back of her throat extended throughout her gastrointestinal tract. She had Crohn’s disease. An estimated 780-thousand Americans have Crohn’s. Most of them diagnosed between the ages of 15 and 35. And unlike other inflammatory bowel diseases, Crohn’s symptoms can be vague, ranging from diarrhea, to constipation and abdominal cramps.

“Many patients don’t present with the disease until they have a complication. A perforation. Or a stricture causing a blockage,” said Marc Schwartz, MD from the UPMC Division of Gastroenterology at UPMC IBD Center.

“My first surgery they took out five inches of my small intestine. Then while they were in there they found another five inches of stricture in my colon,” Shannon said.

During the second surgery, doctors removed another four inches. Right now, medication controls Shannon’s symptoms. Her experience with Crohn’s sparked an interest in medicine; she’s now a nurse, working with other gastroenterology patients.

“I’m just a big advocate about being open with everything about it,” Shannon said.

Helping spread the word about the so- called silent disease.

Experts say the majority of Crohn’s patients can manage the disease with medication and many do not require surgery. They’re still not sure what causes the condition but say genetics and a trigger like a viral infection may play a role.

BACKGROUND: Crohn’s disease may affect as many as 780,000 Americans. Men and women are equally likely to be affected, and while the disease can occur at any age, Crohn’s is more prevalent among adolescents and young adults between the ages of 15 and 35. Recent research suggests genetics, and/or environmental factors contribute to the development of Crohn’s Disease. The GI tract normally contains harmless bacteria, many of which aid in digestion. The immune system usually attacks and kills foreign invaders, such as bacteria, viruses, fungi, and other microorganisms. Under normal circumstances, the harmless bacteria in the intestines are protected from such an attack. In people with IBD, these bacteria are mistaken for harmful invaders and the immune system mounts a response.

TREATMENT: Medications that treat Crohn’s disease strive to help control the inflammation that plays a role in Crohn’s symptoms and induce remission. It’s important to note that the medication your doctor prescribes may depend on whether you have mild, moderate, or severe Crohn’s and/or where in your GI tract your disease is active. Medications may include antibiotics, aminosalicylates, corticosteroids (steroids), immune modifiers, or biologic therapies. Some people with Crohn’s disease may benefit from the diet changes, such as limiting dairy products, more low-fat foods and fiber, avoiding “gassy” foods, eating smaller meals and drinking plenty of water.

NEW RESEARCH: To people living with Crohn’s disease, it may sound too good to be true: a vaccine that doesn’t just treat their illness,but cures it. Yet Jonathan Hermon-Taylor, a fellow of the Royal College of Surgeons and a professor of surgery at King’s College, London, is cautiously optimistic about offering exactly that to patients in a few years. The retired physician and molecular scientist has devoted a great deal of his career to studying the microbiology of inflammatory bowel disease (IBD). After decades of research, he has concluded that Crohn’s may be caused by a single bacterium: Mycobacterium avium subspecies paratuberculosis, or MAP, which he reported on in a review published July 2009 in the journal Gut Pathogens. The vaccine has already been through one round of clinical testing, conducted through Oxford University in the UK. That trial found the vaccine safe for healthy human volunteers.

If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marjorie Bekaert Thomas at mthomas@ivanhoe.com

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